PMNET forum to launch important discussion on strengthening patient organisations and their involvement in research

This week, Riga will host the international PMNET forum, which will bring together experts in healthcare, research, and innovation from across Europe. As part of the forum, a special discussion dedicated to patient organisations will take place on 9 October from 10:30 to 12:00 at the National Library of Latvia: How to strengthen patient organisations and promote their involvement in research and innovation projects?

In recent years, there has been increasing discussion about patient involvement in research, but in practice this is often limited to symbolic participation. The participants in the discussion will address the issue of how to ensure that patient representatives are involved from the very beginning, from the project idea and design development stage. They will also look for ways to make cooperation between patients, clinicians, and researchers regular and structured, rather than just occasional.

Participants will also discuss administrative and practical barriers that often hinder the involvement of patient organisations, such as lack of resources, and legal and financial procedures. The discussion will also focus on the support needed to enable patient organisations to participate fully in research and innovation projects.

Special attention will be paid to how research infrastructure and project coordinators can help patient representatives in practical ways, such as with Horizon Europe procedure administration or funding management. Participants will also discuss the idea of establishing a formal support mechanism – a patient office or mentoring program – to provide professional assistance to organisations throughout the entire project life cycle.

In conclusion, the participants in the discussion will outline their vision for the future – what the three key prerequisites would be for patient organisations to become equal partners in research and innovation within the next five years, and how can each participant help to achieve this goal in their professional work?

Participants

• Marita Gunn Sandnes, patient expert from Norway with many years of experience in patient organisations and their involvement in research and innovation processes;
• Anita Kavlie, representative of the European Association for Translational Research Infrastructure (EATRIS), responsible for coordinating cooperation between scientists, industry and patient communities;
• Dr. Viktorija Ķēniņa, doctor and researcher at Rīga Stradiņš University, who actively researches the integration of patient experience into clinical and academic work
• Sanita Siņica, board member of the Latvian Alliance for Rare Diseases, one of the most prominent patient advocates in Latvia and Europe, who advocates for patient participation in research, innovation and policy-making.

The discussion will be moderated by Marta Augucēviča, project manager and rare disease expert with extensive experience in health policy initiatives. She represents the Latvian Alliance for Rare Diseases and the Pauls Stradiņš Clinical University Hospital, actively participating in European cooperation projects, the development of biobanks and precision medicine, as well as the integration of patient interests into the healthcare system and research.

This session is particularly significant because it includes Marita Gunn Sandnes, a patient expert from Norway who has experienced the impact of a rare diagnosis on family life first-hand. Marita lives in Norway with her husband and two sons, and her youngest son Henrik was diagnosed with a de novo mutation in the GRIN2B gene – a rare genetic change that affects brain development and nervous system function. The family learned of the diagnosis when Henrik was about eight years old. Since then, the Sandnes family has been actively collaborating with other families and patient communities through social networks and international platforms to share experiences, provide support, and promote the exchange of information on research and treatment options. Marita is a board member of GRIN Europe, an organisation that brings together families, researchers and experts from across Europe with the aim of strengthening awareness, research and support for GRIN syndromes. As part of her initiative, in 2021, GRIN diagnosis was included in the National Advisory Unit for Rare Disorders, which operates within the Oslo University Hospital in Norway. Marita's personal experience and professional activity are an example of how the voice of patients can become a significant driving force in research and innovation. Her participation in the session will provide a unique and inspiring perspective on how to meaningfully involve patients in scientific processes and how to build sustainable cooperation structures between families, researchers, and institutions.

The discussion is organised by the Latvian Alliance for Rare Diseases and Rīga Stradiņš University as part of the EATRIS-Connect project. The aim of the EATRIS-Connect project is to strengthen cooperation between patient organisations and research infrastructures across Europe by creating new cooperation structures and training programmes. The discussion will be held in Latvian with English interpretation.